Validating a model of chronic illness and family caregiving
These consequences include impeding information sharing between family caregivers and providers of care (Crotty et al., 2015; Petronio et al., 2004), tense and adversarial health system interactions, and expensive and unwanted care that is inconsistent with older adults’ preferences (Abadir et al., 2011; Levine and Zuckerman, 1999; Srivastava, 2010). One national survey found that only one in three family caregivers (32 percent) reported that a doctor, nurse, or social worker had ever asked them about what was needed to care for their relative. Early community-based utilization and its effects on institutionalization in dementia caregiving. In some ways, the challenges that individuals encounter in navigating the health care system are amplified for caregivers who are acting on behalf of an older adult.
The current paradigm has significant negative consequences for all stakeholders—older adults, families, providers, and systems of care—and presents critical ethical challenges for providers (Barnard and Yaffe, 2014; Hinton et al., 2007; Mitnick et al., 2010). The focus in this chapter is on caregivers’ experiences as they try to fulfill their roles in today’s health care and social services settings. The objective is twofold: first, to describe how the “current paradigm” for providing health care and LTSS serves more as a barrier than facilitator for effective caregiver involvement in older adults’ care and, second, to review ways to move to a “new paradigm” of person- and family-centered care and services with the potential to optimize caregivers’ support of older adults. CGs can inform providers’ therapeutic advice if they help fill in missing details from older adults’ health history (e.g., current and past medications, allergies, past treatments). If providers ensure that CGs understand the appropriate use and potential side effects of medications, CGs can facilitate appropriate use and recognize adverse effects if they occur.
In fact, the impact of specific caregiver characteristics on older adults’ health outcomes is limited and not well understood.